April 16, 2009

I'm out of sorts

Hannah is a Junior Girl Scout. Before we moved to the Richmond area she was in a great Brownie Troop. I didn't realize how good it was until she joined a troop here. It took us a year to find a troop that was accepting Scouts. So Hannah joined in January.

It's an odd conglomeration of troops--there are about 4 or 5 Juniors, 3-4 Cadettes, and a few seniors. There are many troop leaders, all of whom are apparently very close. I made the decision not to get too involved with Hannah's group because I want her to have the chance to be more independent. She's with me more than enough, and we both can use some time apart. I stay at the church where they meet, but I go read in another room, or find something helpful to do that isn't interfering with her group. I discussed Hannah's abilities and challenges with the troop leader, and felt that she understood that Hannah should, and could, be fully included in activities. Of course I offered to help if she needed it, but explained that I was hoping to let Hannah chart her own course in the troop.

In 4 months, I think that the Juniors have worked on part of one badge. The rest of the time they spend helping the older girls with their endeavors, which seem to be crafts for Tea Parties. This troop likes to invite Brownie and Daisy troops to Tea Parties. They spend several meetings making crafts (painting pine cones into flowers...?? Making Japanese fans and origami? For three or four meetings in a row?). Then there is the actual tea party, where 20-30 little girls come to learn etiquette and gorge themselves on all kinds of food which the troop supplies. They never have any kind of opening or closing ceremony at any meeting. They never do any kind of flag ceremony, or any "Girl Scout-y" things.

This is all fine, I suppose, but it isn't what we were expecting from Girl Scouts. The scouts and leaders are welcoming enough. But they just don't get it. Hannah wants to be a part of the group. She wants to contribute. For the first Tea Party, Hannah arrived in her "hostess" clothes, as requested. However, she never got to do anything. They ended up telling her to go sit with the Daisies and Brownies.

I wasn't happy with that (Hannah is as tall as an average 12-13 year old--and she was 10), she doesn't need to be with 5-7 year olds. I'm not at all about appearances, but really, it doesn't work to put the only kid with a disability in with the little kids. I could tell she felt awkward, not only because she was the only one who was dressed to "work", but because she didn't know anyone at the table and she was so big. But the main point is, she wasn't included in her troop.

I let that one slide. But when I learned that they were planning another tea party, I repeatedly requested ways for Hannah to participate--certainly she can serve snacks and pour tea. Certainly she can bake goodies and bring them, just like her troopmates. The leaders promised to email me or call me with assignments. And even when I emailed them, two weeks ago, I got nothing other than, "Oh, don't worry, we have everything we need." The Tea Party was tonight. I got my first phone message at 4 p.m., saying that Hannah could bring some rice if she wanted (???rice??). I decided that Hannah didn't want to bring rice (who brings rice to a tea party?)--We didn't have time to fix anything appropriate, so she went empty-handed. It was not a problem--there was a big spread of treats (and no rice).

When we arrived this evening, they whisked Hannah down the hall--I assumed to have her get to her post. She did help check in the party guests. I stayed around for a while, but I needed to run an errand. When I came back, I was surprised that Hannah was, again, a guest at the tea party. She had her back to me, so I could observe the situation without having to reveal myself. Ugh. They were so patronizing to her. Everyone was treating her as if she was five years old. It made my stomach drop.

When we started the IEP process when Hannah was 3, we made up a list of Hannah's strengths and weaknesses. One of the threats to Hannah's development we listed was "The low expectations of others."

While we've had small instances of low expectations, with a particular Sunday School teacher, or an occasional incident with a store clerk or neighbor, this is the first time I can think of an entire group of people I know negating Hannah's abilities. And it pisses me off. And I hurt for her.

When she was first born, of course I convinced myself that we'd have the brightest and best child with Down syndrome ever. Over the years, we've gotten off our high horse and re-tooled our expectations to have the brightest and best Hannah ever. Boy do we love her!

Nobody wishes pain on their children. I remember, in those early years, deliberating...would it be easier for Hannah to not know that she's different? If she didn't have the ability to understand her disAbility, would she be happier? If she's aware enough to know about how she's different, how and why it's hard for her to learn, aware enough to understand taunts and teases and cruelty, is that a good thing? It is, if we want her to be competent enough to live independently. So, of course, to be the Best Hannah, we have to expose her to the pain.

As I kissed her good night, I asked her if she liked being a guest at the tea party, or would she rather have worked at the tea party. She said that she'd like to have done both. She cried a little. She's no dummy. She knows what is going on.

I don't know where this leaves us. I think we'll probably have to stick it out until the end of this school year. Hannah's not going to want to quit. And I'll have to try to negotiate my way through the clique of leaders and make them understand they need to give her a chance. I'd rather just quit. But that doesn't do anyone any good.

As I've been writing this, I've been feeling as if I'm not quit able to fully tell the story. I wasn't sure where I was going with this post, other than to vent. And I'm not sure I'm saying anything of value, or that I've said what I wanted to say. I've let it sit overnight, and I'm still not sure whether I should post it "as is", or let it simmer a little. But, onto the blog it goes--I've got go out of town for the day, so no time to wallow.

Thanks for letting me have my own little pity party.

12 comments:

grammy em lee said...

Hi Beth, I am so sorry to hear about Hannah's Girl Scout Troop. sounds more like a social society then Scouts. I remember years and years ago when I was with a troop in San Diego after returning from the Philippines, the troop I joined was very standoffish and pretty much kept this "new"person out of the loop. Even the leader did. I stuck it out till the end of the year and then was given the insult of not being given "all" my awards. I was told because I had not been in the troop the whole year (even though I was a traveling millitary kid)I was not entitled to my year award. The leader would not have it. That was the end of scouting for me.

I believe that Hannah needs a better troop. Check with the counsel and see if they know of a great troop. I feel for you and Hannah.

Deb Dougherty said...

Beth, you are such a wonderful advocate for Hannah! I really like what you wrote, "....to have the brightest and best Hannah ever". And boy is she bright!! I will always cherish the memory of Hannah reading to Anya!! I am very upset that this made Hannah cry. Perhaps Hannah will be their teacher to show them that those with Down syndrome can do whatever anyone else can do. That she too, can be the "hostess" to the little girls. I know she was a wonderful hostess to us, when we had our tea party. It is so hard, as a mother, watching your child learn a life lesson, especially so young. Vent away!! I feel your pain. And I am ready to take out a girl scout troop. ;)

Chrystal said...

This is heartbreaking. I'm glad you posted it though. Really.

I want so badly to march over to those folks and tell them a thing or two. Can you, in a less aggressive way than I'm feeling right now, approach the adults and have a heart-to-heart about what you witnessed?

My first thought was to have a meeting topic be about the realities of Ds since they probably have no clue of your daughter's potential, but why make Hannah feel even more "different"? Ugh, I still have so much to learn.

I'm so sorry they hurt you both.

Monica said...

Ugg!!! I hate when this happens!!! And I think what probably makes it even more frustrating is that you were in a great group and you know it CAN work and can be successful. I hope there is another troop in your area you can try next year!!! Good Luck!!

Karly said...

My heart broke a little reading this. It really is my worst fear, people writing off my kid, patronizing her. I mean, I worry about other things like speech, writing, life skills, but in the grand scheme of things I know that what we really want for both kids is just acceptance, respect and understanding. {hugs}

exnyers said...

Beth, I think you explained the whole deal very well... I'm sitting here reading this with tears rolling down my cheeks because I just want to puke over their treatment of Hannah. You impress me so much with your ability to always figure out and do what's best for HANNAH and not necessarily what's more comfortable for you. Hannah is so awesome. Not because she's an impressive kid who has Downs Syndrome, but because she's an impressive kid. Period. I'm sorry you are going through all this. Hugs to you and Hannah. Not including her and missing out on all she's got to offer is their loss.
Your pal :)

Lovin Mama said...

My girls are in scouts. From talking to friends, I've found there can be big differences from one group to another. Ours has changed so much (for the better) since last year because of a new troop leader. I would feel the same way you do. Can you explain, again, to them what you want for Hannah? Maybe they need examples of what she is capable of a does for herself and others at home? When I was unhappy with our troop last year, I looked into 4-H. Its another option. Good luck with everything.

Holly S/NC said...

Beth,

I hate to hear this about GS. We are preparing for our horseback riding trip today and I wish Hannah was in our troop! She has more horse riding experience than the rest of the troop, combined. She would be the star out front!

And we are camping in 2 weeks. I know she would do a great job and complain a lot less than some others in my troop!

I second the suggestions to find another troop. When a girl with a disability was looking around for a troop, she obviously found an advocate in me. (I was our district's placement person this year.) I know that is even harder, to find a leader who *also* has a SN child, but you know they will want to include your child because they want their own child included. I would be very honest with your placement person about that.

good luck. I am glad that Hannah does not want to give up.

Holly

Catherine said...

So funny that you weren't sure of the reason for your post - because I immediately emailed Jay and told him he must check it out. You expressed something so eloquently that we have grappled with since Lois's birth. Do we want her to be unaware of the possible teasing and exclusion? Or do we want her to be "with it" enough to be an independent little person - and therefore aware of her disAbility? Hannah is so lucky to have you - and I count myself lucky to know you. Someday I will have LOTS of questions for you. Will you be my parenting guru, please?

Anonymous said...

Beth,

I was sorry to come to your blog and read this entry.

We have missed you. We have been very busy and out of the loop. We would love to have Hannah over to hang out.

You are an amazing mom and you definitely have an amazing Hannah!! You have definitely help her become the "best" her.

Karen

Julia said...

Oh {{{{HUGS}}}} to you and Hannah, both!

Whether you change troops or not, perhaps there's a way to use this to help teach Hannah how stand up for herself? Maybe send a note (her composition), saying how much she liked helping, and next time she'd like to help more. Short, gracious, sweet. Find a way to reinforce what they did right (sorta), rather than focus on what they did wrong.

You can reinforce the message with the troop leaders conversationally, saying how much happier Hannah was this time during the part of the program when she was treated as one of the big girls and part of the team.

But -- yuck.
Julia

Dustin and Kelly said...

Beth, unfortunately I have nothing to offer in the GS category, but I would like to say that I think it was a great idea to post this blog. I always appreciate being able to read the emotion of others, especially since I feel like I can't adequately express mine. Landon is still young and I don't often think that far ahead. And really, I don't worry any more about him being accepted by others than I do McKayla. But I think that is because I don't see him as any different, but I'm sure others do. I do, however, feel sad that Hannah had to experience this. It is such a shame that others are so closed minded not to even allow themselves the opportunity to recognize and see her true potential. Keep going, Beth. You're doing a great job and you are paving the path for those of us following behind.